To the NBA Player Who Didn't See My Son's Disability

Thank you for sitting and talking with my son, Davis. Although, for you, this was just a moment in time before heading off to your work as a basketball player on the Boston Celtics, for us it was a glimpse of our boy living his dream.

I don’t know if Davis mentioned it or not, but he wants to be a professional basketball player too. Although the slim odds for making it into the NBA would discourage most, Davis will not be deterred. His optimism is one of his best qualities.

This may be one of the most challenging things about being Davis’s mom. How do I encourage his dreams, knowing that his aspirations are beyond his reach? Do we get to a point when we’re sitting at the table when he’s 30 years old and he’s finally acknowledged it isn’t going to happen? Or will we still be talking 20 years from now about what round of the draft he’ll get picked in? Does it matter to him? Does it only matter to me?

I know our society doesn’t value individuals like Davis, slow in mind and body, but Davis doesn’t know that. He knows our society values professional athletes, and so he plans to join your ranks, not only for love of the game, but for its reward as well. Did he tell you about the mansion he’s planning to build with his NBA salary?

So as we navigate the terrain of guiding this child as he grows, we thank you for giving us a story to sustain his dreams and bridge the gap. We’ll talk of the time when he sat with Gerald Wallace, and shot a hoop or two, and hope that gets him – and us – close enough.

For all of November, The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected].

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A Director’s Siblings Inspired Her to Make a Riveting Film About Down Syndrome and WWII

When Sarah Lotfi was a child, she and her younger brother, who has Down syndrome, used to play in front of the TV, and act out every movie and show together. “Even if he couldn’t speak the lines, he would get the intonation right,” Lotfi told me when we spoke. “It was fun and exciting for us.” She loved to see him connect with what was on the screen.

It’s fair to say Lotfi also connected with what was on the screen — she’s now an award-winning screenwriter and director. Her latest project, Menschen, is her most personal film to date. “Maybe before this point I would have said, No [to making this],” she confessed. “It’s too close to home.” But when the story called, she rose and answered.

Shortly after making a World War II short film, The Last Bogatyr, Lotfi came across a picture of a boy with Down syndrome that an SS photographer took during the WWII time period. “Oh, God,” she thought. “What happened to that kid?”

How could someone live with those overwhelming odds against them? “I wanted to tell a story of hope,” Lotfi explained. So she did. In under 30 minutes, Menschen follows through on Lofti’s promise to “challenge prejudice behind stereotypes like ‘enemy,’ ‘disabled,’ or even ‘hero.’”

Lotfi also has a sister with Down syndrome and she pulled from her experiences with both her siblings to create a character named Radek, who is the “found boy” in this complicated story set at the end of the war.

Radek is played by a young actor named Connor Long, who has Down syndrome. Long currently lives in Colorado, where the movie was filmed. Lotfi didn’t meet him until his audition. “The moment I saw Connor, I thought ‘He’s perfect,’” she recalled. When he did read, he so powerfully conveyed the emotion, he made another reader cry.

Lotfi said she enjoyed getting to know Long during filming. She describes him as a “character” and a “charmer,” but mostly she’s impressed with his ambition. “It’s amazing what he is doing as a self-advocate,” she said. “To see him is…inspiring.”

Since the film’s release, people around the world have shared their connections and personal stories with Lotfi. She’s touched by anyone who sees a reflection of themselves or someone they love in the film.

Menschen is being presented across the country in collaboration with The Arc, an advocacy group supporting the movie’s primary theme, “Life worthy of Life.” To see more about the film check their website and Facebook page. To read plot summary and reviews, head here and here.

Parisseaux’s original post went so viral Facebook thought it was an ad and removed it, according to La Voix Du Nord. To get around this, his wife, Jacqueline, again reiterated the call for cards on her Facebook page, and people all over the Internet once again enthusiastically received the message.

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10 Things Siblings of Individuals With Down Syndrome Wish You Knew

There are many misconceptions floating around about Down syndrome, people with Down syndrome and their families. In my experience, the idea that having a sibling with Down syndrome is nothing but burdensome or unfair is one of these huge misconceptions. Just as every individual is unique with or without Down syndrome, every family dynamic is unique. My story might not be in line with every sibling to a person with Down syndrome, but I believe many of us having more than a few of these qualities in common.

1. We are understanding.

In 2011, Dr. Brian Skotko found in study conducted at Children’s Hospital Boston, “among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.” While my situation is different — I’m 15 years older than my brother and now an adult living away from home — learning to become a good sister to John and good daughter to my parents facing their newborn’s Down syndrome-associated heart defect in the midst of my temperamental teenage years helped me to become a better, more compassionate and accepting person. I hear parents and expectant parents of children with Down syndrome worry that their other children will somehow be scarred by the redirection of their focus to their child with developmental differences. Again, the emotional needs of a 15-year-old are different than those of a younger child; but, personally, I would rather feel valued for being a compassionate and caring person and helper than given undivided attention and exclusive use of my parents’ time and resources. My parents did a good job expressing their appreciation for the help and empathy my sister and I contributed.

2. We Don’t Have It All Together

Just because we tend to feel more accepting and have a lot of practice in patience doesn’t mean our family is any less crazy than yours. Additionally, though we may have learned different communication techniques to interact with our sibling based on his or her unique needs, we still drive each other up the wall sometimes. My parents like to joke that sometimes you wouldn’t know my sister and brother are 12 years apart; they annoy each other like they’re much closer in age. My sister loves to tap my brother’s iPad games over his shoulder, and he loves to break into her room and jump on her bed. We’re just like any other family, and we have the same kind of relationship with our sibling with Down syndrome that we do with our typical siblings.

3. We Have Strong Families

Maybe this is specific to my family, but from what I’ve observed, it seems common in the Down syndrome community. Part of it could be our desire to ban together to provide the best support for our loved one with Down syndrome as we tackle unique challenges together. My brother has helped our family to form a stronger bond, a sense of community and belief that we’re all in this together. We do everything in our power to support and protect each other, whether it be from outside negativity, inner self doubt or a system that just isn’t doing enough to provide resources that our family needs. I also feel particularly fortunate to have a brother who expresses happiness so freely. When John is happy, which is often, he will tell you, he will jump and laugh and insist, rather stubbornly sometimes, that you laugh along with him. This determined purpose to support one another combined with the continual happiness check-ins from my brother has helped our family develop a culture of joy.

4. We Worry About Our Loved Ones

When John was born, he was diagnosed with Atrioventricular Valve Defect (AVS), a serious heart condition which required surgery, and by the time he was 6 months old, he’d undergone two serious heart surgeries — one to reconstruct his heart to function properly and the second time to install a pacemaker after he went into cardiac block. He’s now doing fantastic and doesn’t even need to use his pacemaker, but these memories stay with us. Life-threatening medical complications can happen to anyone, and when something like this does hit that close to home, it’s nearly impossible not to be changed and have a stronger appreciation for how little control we have over our lives and those around us. I worry especially because certain diseases like leukemia and Alzheimer’s pose a greater than average risk to people with Down syndrome, and I can’t bear to think of my brother so fragile again. I also worry about my parents because of how much my brother needs them. I need them, but if anything were to happen to them, John would be my responsibility. I would gladly take care of him, but I just can’t imagine how difficult it would be for all of us emotionally. How could I possibly explain something like that to him? I also worry about everyone’s mental and emotional health. There’s a lot of stress involved with raising a child with special needs in a society that doesn’t accept them fully. I know we all love this journey in our family, but it can also take its toll on my parents when there are so many questions yet to be answered and so many resources we still have yet to find. Then there’s bullying. I pray from the bottom of my heart that my brother never has to face bullies, but I know that it’s realistically an issue for any kid, especially one seen as different. We have so far to go.

5. We Want You to Know About Us

I never hide my brother’s story or my family’s story. It’s important to me and an integral part of who I am, and I want people to know that about me. I want people to be aware of my brother and the challenges he faces and the abilities he has so our society will change its attitude towards people with Down syndrome or other intellectual and developmental disabilities. I want people with typical children to make an effort to teach their kids about children and adults with special needs. We want awareness so we can break down the irrational and unfounded fear of the unknown associated with disabilities.

6. We Need Community and Crave Inclusion

I love attending events within the special needs community. From Miracle League games to the Buddy Walk, it’s wonderful to be immersed in a community full of people who all seem to understand each other and have an appreciation for the differences that make our loved ones so unique and special. We also want our families to be accepted and appreciated in the community at large. We want to be treated like anybody else. It can be frustrating when people make comments or facial expressions that express pity towards us. My brother is awesome, and we’re probably having a great time when you see us at the park; feel free to say hi. You don’t need to feel sorry for us; if there’s anything to feel sorry for, it’s the other-ing and minimizing of a part of the population we should be proud of. Our differences make us better. We learn from differences. We should be happy and proud to include people with all kinds of differences into our community and society at large.

7. We Can’t Possibly Fathom How So Many People Don’t Get It

“Down Syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in ever 691 babies in the US is born with Down syndrome),” according to GlobalDownSyndrome.org. Just months ago Richard Dawkins caused an uproar when he tweeted about his belief that it’s immoral for a woman to knowingly give birth to a baby with Down syndrome. Some doctors are still suggesting expectant mothers terminate pregnancies when the infant is suspected to have Down syndrome, and some are still implying to expectant and new parents of babies with Down syndrome that their child will never be able to interact with them, walk or think for themselves. We just can’t understand how people can be so ignorant. We need to wake up.

8. We’re More Alike Than Different

My brother has Down syndrome, but it doesn’t define him. He’s a smart, mischievous, tech-savvy, funny, sweet, wild yet sensitive 8-year-old boy who loves music, dinosaurs, his iPad, his teacher and his family. He has a strong will and sense of determination. He’s a lot like any other 8-year-old little boy. It’s time to stop looking at people with developmental disabilities as less than. Everyone is unique and our differences should be embraced and celebrated. People with Down syndrome are just like you. They want to be loved, included and valued; they want to live meaningful, happy lives just like everyone else, and they’re absolutely capable of achieving these things

9. We’re Reminded of What’s Important in Life Every Day

My brother has the unique ability to cause the people around him to reevaluate their priorities. We can get so caught up in the rat race of life, and John reminds us that it’s our loved ones who are most important, and we need to slow down and make the time to be with them and laugh with them. I’m serious — sometimes John is unrelenting about insisting you laugh with him. He knows laughter can turn your day around and make you happier even if it’s not genuine at first. John knows a lot of things that people don’t always give him credit for, and we’re reminded of what’s important when we take the time to learn from him. People, our relationships, love — these are the important things in life. Everybody just wants a purpose in life, to mean something.

10. We Love Our Siblings Just the Way They Are

John is an incredible, unique, joyful little boy. I love him exactly the way God made him. I want him to grow and learn and have every opportunity in life, but I don’t wish he was anyone other than John. He is awesome, and I love him no matter what.

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Awesome Photo Series Captures People With Down Syndrome Showing Off Their Individuality

One photographer is out to demonstrate that people with disabilities, like all people, are more than a stereotype.

Germany-based photographer Linda Dajana Krüger, who goes by “Dai Lyn Power,” recently completed a photo series called “Real Prettiness” that captures the individuality of people with Down syndrome. In each portrait, Power attempted to draw out the character of her subjects as well as highlight their playful sides. She wanted to show the men and women exuding confidence and as they want the world to see them.

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The Time We Stumbled Upon 20 People With Down Syndrome Dancing in the Park

Sometimes I truly think stars align, fate knows what it’s doing, and you’re meant to be in an exact spot at an exact moment for an exact reason — whether that’s meeting the love of your life, winning something for being the 100th shopper or experiencing a moment you didn’t even know you needed.

Take today for example…

My husband, Craig, my daughter, Pip, and I had a beautiful moment — a moment that could have easily not have happened. We could have lazily stayed a few extra minutes in the quaint little seafood restaurant we were having lunch at, had a coffee or another delicious glass of sangria. We could have walked up a different street in search of the coffee we missed out on. We could have decided to stick closer to home instead of braving the rain and walking around downtown. We could have kept my son, Noal, out of daycare and hung out with him, instead of having a much needed date together.

A million different things could have happened to not have us in this exact moment — a moment I believe we or (at least I) really needed. But, the stars aligned and it happened as if fate knew it should. It was nothing extraordinary, and it may seem simple to y’all, but for me the moment took my breath away.

As we left the restaurant hand-in-hand, we walked through a park where we saw a brass band setting up to play under a pavilion. As much as we wanted to stay, we continued to walk (rain and my hair sends me into a panic, and our parking meter was about to run out). But we got caught up in a group of people. From what seemed like out of nowhere, a group of 20+ adults with Down syndrome filled the park. All of a sudden that park and that moment was where Craig and I needed to be.

The band started to play. I saw a few people look at each other and wink with delight and then begin to dance — beautiful dancing right in the park with nothing but utter joy on their faces. I was frozen in time for a few moments just watching it all, trying to get close, talking to a few about Pip, hoping for an invite to dance with them.

I felt nothing but happiness watching, but as Craig and I walked away I was overcome by emotion. I’m not sure why; I think it has to do with the whole spectrum of Down syndrome — not knowing where Pip is going to fall within that. Will she be the joyous one dancing if she hears a brass band in the park? Or will she be the one who couldn’t speak and needed help walking?

Since Pip was born, words like “wide spectrum,” “variability” and “severity” have been thrown around in regards to Down syndrome from numerous doctors, nurses, books, other parents, etc. It’s always been in the back of my mind, wondering where Pip will fall on the spectrum — finding hope from one doctor who says if Pip has this or that then she’ll fall here, if she doesn’t have this or that then she’ll fall there… It’s all a bit overwhelming and confusing.

As I watched the group,with people scattered all over this spectrum (I use the phrase without knowing medically, intellectually or physically anything about any individual- just based on what I could see), I found myself just deeply hoping above anything that Pip would be happy. If she ended up being like the young man with the top hat, tapping along to the beat but not vocal or the older lady who came over to us and had to make sure Craig was indeed Pip’s dad, or the one I hoped would invite me to dance but who instead kept waving and blowing me kisses. Whoever she happens to be, wherever she happens to fall on this much talked about bloody spectrum, I just want her to be happy and know she’s loved, so, very, very loved.

We won’t ever really know where Pip falls until we’re there in it. When she’ll hit milestones, if she’ll walk, talk or be able to take care of herself. And I guess at the end of the day, it’s all about day-by-day — taking each day, each step, each dance if you will, one day at a time and finding joy wherever Pip falls.